Erica’s Blog

Sounds like a “B” horror movie, doesn’t it?  This time it’s Thing Two.  On our way to the Time of Remembrance, she said her stomach didn’t feel good.  She was fine all evening, though.

When I went in to get her up this morning, I saw that she had puked in her bed in her sleep.  Poor kid didn’t even wake up, so she didn’t know she had.  Needless to say, I’ve got lots of icky laundry this morning.  Unfortunately, she’s got the bug at both ends, poor thing.  Bobcat’s stopping at the store for me and getting some essentials I need for Thing Two.  So, it’s another jammie day in our house….

The Time of Remembrance at UCSF went well last night.  The girls goofed around with the camera a bit, so we have a few pictures.  Unfortunately, I forgot to ask Hubby to videotape my “personal reflection”, so I can’t really share it with you. 

Here are the basics of how the evening went, though:

• Yummy “light supper” donated by Whole Foods
• Welcome by Executive Director of the hospital
• Opening by Director of Spiritual Care Services
• Reflection & reading by Chief Pediatric Resident
• Reading (supposed to be a nurse from the ICN, but she wasn’t there)
• Reflection & reading by a dad who’s also a doctor
• Reflection by Assistant Professor of Pediatric Hematology/Oncology
• Reading by two sisters of a boy who died
• me
• Open mic for people to get up and share their reflections
• Reading by Assistant Clinical Professor of Pediatrics/Neonatology
• Reading of the children’s names
• Candle-lighting
• Reading by Manger of Pedatric Social Work
• Spanish/English reading by a Pediatric ICU nurse & a Child Life Specialist
• Closing
• Dessert

The gist of my reflection was this:

The last two years or so, my life has been characterized by a series of questions.

• How did I get pregnant?  How will we handle this?
• What if Paul has something fatal?  How do you plan a funeral for a baby?
• How do we balance my health & his health?  What if my organs start shutting down?  How long can we keep him inside?  What if I go into labor?
• How do we handle his disabilities?  What do we do if he gets to leave the hospital but can’t come home?
• How do we know when it’s time to remove the ventilator and other life support?  How do we deal with this?
• How will we survive?  How do I even get up in the morning?

After Paul died, there were different questions.  Some were unanswerable and only led to bitterness and more pain :

• Why us?
• Why Paul?
• Why do those people get to have a healthy baby and we don’t?
• How can I face yet another person who asks where my baby is?  How do I keep from answering “Saint Joseph’s Cemetery in San Pablo”?

Other questions have led to positive things:

• How can we bear this pain?  How do others survive?
• • We started attending SAND meetings periodically and made some really special friendships.
• How can I turn my pain into something positive?
• • Picked up my knitting needles and knit my grief, then wrote about it.
• How can we honor Paul’s life and use it to help others?
• • Donated his life insurance money to The Hope Technology School.
  • Did the March of Dimes walk.
  • Made a donation to UCSF Children’s Hospital on the anniversary of his death.
  • Make an annual donation to the Macy’s tree-lighting to benefit UCSF Children’s Hospital.
• How can I help other parents like us with babies like Paul?
• • Made preemie hats for UCSF ICN.
  • Made hats & other things for The Preemie Project.
  • Working with other parents from SAND to provide care packages for parents of dying babies.
• How can I raise PAIL (Pregnancy And Infant Loss) awareness?
• • Wear picture button of Paul July 12 - 31 every year.
  • Wear the button during PAIL Awareness Month every October.
• How can we use our pain to educate others?
• • Spoke at Synergy nursing conference in November.
• How can I reach out to others in the world at large?
• • Had the story of knitting my grief published in December in a major online knitting magazine.

 All these great things that have happened since Paul’s death by no means make his death worth it or OK — nothing could — but with each positive thing, the pain is a little less raw, the load a little lighter, and I take another step or two toward healing.